Rheumatoid Arthritis Pain Persists

This is Part 3 of a series on Rheumatoid Disease / Rheumatoid Arthritis pain. In Part 1 we looked at the role of pain in the disease. Part 2 examines a popular study on Remaining Pain and poses 12 reasons that current explanations for Remaining Pain are wrong. In Part 3, we’ll see that the idea of Remaining Pain originates with a misunderstanding of Rheumatoid Disease / Rheumatoid Arthritis pain.

Who has remaining Rheumatoid Arthritis pain?

Remaining Pain refers to joint pain in people living with rheumatoid disease (PRD) who have already been treated with a DMARD like methotrexate. Look carefully at the responses in the remaining pain with methotrexate study.(1)

METHOTREXATE RESPONSES

40% of PRD had a good response*

35% of PRD had a moderate response

23% of PRD had no response

In all 58% reported remaining pain. Who were they?

PEOPLE WITH REMAINING PAIN

29% of PRD with good response*

70% of PRD with moderate response

83% of PRD with no response

“Response” means improvement in symptoms in the EULAR rating system. The first thing to notice is the low response rate. DMARD and biologic response rates tend to be lower than advertised.

Second, did you notice that, even if PRD had little or no response to a medicine, they could have “remaining pain”? Is that actually remaining pain – or just remaining rheumatoid? If the medicine didn’t treat their swelling, stiffness, or inflammation, wouldn’t you expect them to still have pain also?

That’s not remaining pain, but remaining rheumatoid disease.

Calling rheumatoid arthritis pain “remaining pain” considers the DMARD as a cure. It’s like I put a coat of white paint on a blue wall and I ran out of paint. Some wall spots were remaining blue. I should not wonder why. They were not painted. Just like a person with RD was not cured.

It’s also possible that some parts of the wall were painted too thin. These parts look light blue because they need more paint. These are like the PRD who need another medication to treat the disease and its symptoms.

Rheumatoid disease / rheumatoid arthritis pain is no surprise

Adding the 35% to the 23% (moderate or no response to methotrexate) equals 58% of PRD with insufficient response. That’s the same percentage that reported remaining pain. They are not all exactly the same people because some from the good response group had remaining pain. But 58% with remaining pain should not surprise anyone. A majority has been inadequately treated. And the same majority still has pain.

There is no surprise because no one was cured. Symptoms remain, even in those with a “good response.” And because RA / RD is a painful disease, pain is one symptom that remains.

Remaining pain is a useless model

The remaining pain study says: “Here, we aimed to isolate the remaining condition of pain in spite of a clinically well-defined good effect of the treatment.” They define a “good effect of the treatment” without regard to a patient’s opinion. Despite any level of pain. And without ever considering the rest of the disease, beyond the obviously swollen joints.

“Remaining pain” implies that the rest of disease activity has been addressed, and only pain remains.

Rheumatoid disease/ rheumatoid arthritis pain is persistent

The study authors speculated that their patients had not been sick long enough to blame “damage” for their pain. I would assert then that they have not been sick long enough to learn “maladaptive coping” either.

Research confirms patients’ experiences with disease activity and pain. CRP does not correlate well with patient’s outcomes, but patient-reported outcome measures do.

Rheumatoid disease should be treated seriously to provide the best care possible and hopefully reduce the mortality rate of RD. No aspect of RD / RA should be assumed to due to maladaptive coping.

Advice for clinicians or investigators working on Remaining Pain

Use expert MSUS to detect the presence of inflammation, not just ESR / CRP. Those tests may miss disease activity with many patients.

Trust patients; they know the totality of their symptoms, including the ones you are not measuring or tracking. Ask them where it hurts and what they can’t do.

I ask detailed questions to pick apart claims of some researchers that millions of people with rheumatoid disease (PRD) actually have low pain thresholds. “Painful as it was to read, I examined the sixty-six footnotes looking for an answer. Many of the articles had footnotes of their own, so it was an infuriating couple of weeks…” Click to keep reading Does Rheumatoid Arthritis Pain Really Hurt That Much?